According to the IOM, 100 million people live with chronic pain. Much controversy surrounds pain treatment. The National Fibromyalgia & Chronic Pain Association (NFMCPA) conducted several relevant surveys with responses from over 5,000 patients/caregivers. NFMCPA wants to build on the interest and involvement of its patient/caregiver members. We propose creating a patient-built, patient-directed, patient-centered research community to develop research questions based on patient experiences with pain interventions to explore what works for people with chronic pain from a patient/caregiver-up approach.
NFMCPA will recruit from our current 150,000+ email subscribers to our monthly Advocate Voice Newsletter and survey announcements, 158,000+ Facebook likes, and 4,000+ Twitter followers, to our 1,700+ closed Facebook community, where we will inform patients about PCORI, CER, and the role patients/caregivers can play in research. We will also use webinars to inform, educate, and engage current/new members in the discussion. A patient-facilitator will solicit patient/caregiver input in our closed Facebook community about interventions that work for their pain experience and what they want studied to address chronic pain issues.
We will engage NFMCPA’s Research Advisory Board (RAB) to review the proposed research questions derived from the research community and narrow the research community’s questions down to a manageable number of choices, based on a set of criteria. NFMCPA will bring those choices back to the community for further discussion and consensus around the final research question(s). Once the community has selected the final research question(s), NFMCPA will form a committee around that question(s) and explore potential research partners.